90. Decoding Brain Fog: Expert Insights with Ilene Ruhoy, MD, PhD

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Linda Bluestein, MD (00:01.718)

Wow, y'all had so many great questions about brain fog. So we are very fortunate to have back with us today, Dr. Ilene Ruhoy. You may remember Dr. Ruhoy from way back in our first season, episode 13, healing the brain holistically. So definitely check out that conversation as well, which will be linked in the show notes. Dr. Ruhoy is a board certified neurologist and earned her PhD in environmental toxicology at the University of Nevada, working directly with the EPA on her dissertation topic of

pharmaceutical residues in the water. Dr. Ruhoy also completed a fellowship in integrative medicine with Dr. Andrew Weill at the University of Arizona. Her interests include connective tissue disorders such as EDS, autoimmune neurological disorders, neuromuscular disorders, intracranial vascular and pressure disorders, infection associated neurological conditions such as long COVID, ME-CSF and PANS-PANDAS.

traumatic and inflammatory brain injury, mitochondrial disease, neurodegeneration, and exposure illness. In addition to her private practice in Seattle, Dr. Ruhoy also serves as the medical director of the Chiari EDS Center at Mount Sinai South and is currently a co-editor of the special issue of neurology and connective tissue for frontiers in neurology. Dr. Ruhoy hello and welcome back to Bendy Bodies.

Ilene Ruhoy (01:23.022)

Hello, I'm so happy to be here again.

Linda Bluestein, MD (01:26.087)

Yay.

Welcome back, every bendy body. This is the Bendy Bodies podcast, and I'm your host and founder, Dr. Linda Bluestein, the hypermobility MD. This is going to be a great episode, so be sure to stick around until the very end, so you won't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Okay, Dr. Ruhoy we're gonna dig in to brain fog. It's such an interesting term and definitely means different things to different people.

How would you define brain fog?

Ilene Ruhoy (01:59.898)

Brain fog is a patient's experience. And usually when I sort of ask further questions regarding their experience of brain fog, you hear a lot of, they feel like they're thinking through a fog, through a sludge, that they're thinking as much slower than they're used to. They have a hard time learning new ideas, storing new memories, recalling words. They feel their processing time is much slower.

They have a difficult time focusing and keeping attention on a single object, specifically with reading a book, for example. They'll say that they have to read a paragraph over and over again, and they still don't necessarily comprehend what they're reading. They definitely have a difficult time watching any television show or keeping track of a conversation. And oftentimes, when I'm speaking with them, if they have a partner that's available for the appointment, I'll ask the partner questions, and the partner will agree that

that oftentimes they have to repeat things that were already said to the patient previously because the patient doesn't remember the conversation or doesn't remember the task that was discussed. So there's a lot of difficulty in retaining and recalling information. And that is often what patients experience is brain fog. Cognitively, interestingly, I do a lot of cognitive testing, they actually score fairly okay.

Linda Bluestein, MD (03:22.286)

Mm-hmm.

Mmm.

Ilene Ruhoy (03:24.75)

But I think also what's important to point out is that some of these patients say that they were very high functioning previously and that they believe that they would have scored even higher prior to the onset of brain fog. But cognitively, they appear to be intact in terms of a frank cognition. So it's not true cognitive impairment. So there definitely seems to be just sort of an inflammatory component of trying to basically process information and retain that information.

Linda Bluestein, MD (03:42.453)

Mm-hmm.

Linda Bluestein, MD (03:54.706)

Okay, and we definitely when you said the word inflammatory, we're definitely going to have to get into that into more detail as we go on. But I want to make sure that we kind of hit some of the basics first. So who would you say is most at risk of brain fog or this type of cognitive dysfunction?

Ilene Ruhoy (04:14.082)

It definitely seems to be.

prevalent in those with fatiguing illnesses that are thought to be post-infectious or para-infectious. Obviously, long COVID is the one that is much more on our radar these days, but also ME-CFS has had a lot of concern with brain fog and cognitive difficulties. As I said, I don't call it impairment per se, but definitely cognitive difficulties. And I should also add that along with the brain fog, there's a change of mood and sometimes changes of behavior.

Linda Bluestein, MD (04:36.98)

Mm-hmm.

Linda Bluestein, MD (04:43.903)

Mmm.

Ilene Ruhoy (04:46.381)

And that's another thing that I ask the partners about, or sometimes other family members, such as parents or children. There are mood disorders that are associated with things like dysthymia or anhedonia, where things that used to bring the patient joy no longer brings them joy.

and it seems to go hand in hand with the brain fog kind of experience. So I think that's another component of it. And there does seem to be an inflammatory component to it, because the history often, if not always, includes an infectious disease. Sometimes it includes recurrent physical traumas like TBIs, concussions, or even whiplash. So I think that that's why I think of it as sort of this neuroinflammatory response.

Linda Bluestein, MD (05:32.095)

Mm-hmm.

Ilene Ruhoy (05:33.102)

And if you think about the classic kind of post-infectious encephalopathies, as we call them, in the pediatric world, of course, there's pandas and pans. This is well known to be post-infectious and where the child was neurotypical on a Tuesday and then woke up on a Wednesday with all kinds of symptoms and change of moods and behaviors. It's very much, which is why it's called neuropsychiatric.

Linda Bluestein, MD (05:39.831)

Mm-hmm.

Ilene Ruhoy (05:59.554)

in the name itself, because there are behavioral changes. And we see this in adults too, though not as obvious, because I think that adults have more ways of trying to manage and curtail some behaviors and mood manifestations than children are. They have much more of an emotional ability that they just can't control. So I think adults are better at controlling it, but there's still a clear change of mood, for sure.

Linda Bluestein, MD (06:15.714)

Mm-hmm.

Ilene Ruhoy (06:28.33)

energy state, and sometimes, like I said, behaviors. So it very much reminds me of these more classic, and I should say better understood, though still controversial, neuroinflammatory disorders that affect the brain.

Linda Bluestein, MD (06:45.634)

That's really interesting because would you say that there are some people that would have the same infection as another person and they're impacted differently? Because obviously, you know, throughout life, we all have various different exposures to toxins and things like that and infections. But we don't all end up with these problems.

Ilene Ruhoy (07:04.706)

100%. I mean, so one of the things that we're trying to understand better is who's at risk and why, right? So, I mean, lots of people have been infected. I mean, we're exposed to viruses every day. Some are so ubiquitous. I mean, they're in our environment. You can argue that by the time we're all of a certain age, we've all been exposed to more than one virus. So why do some people develop these chronic diseases? And we don't really have the answer to that.

Linda Bluestein, MD (07:10.626)

Mm-hmm.

Ilene Ruhoy (07:29.69)

there's likely a genetic variant. We haven't identified it. I'm not sure that there's a ton of robust research going on to try to stratify risk in this regard. There should be, because then it might lead to perhaps more aggressive treatment at the onset of the infection itself. I mean, just even learning that MS has some of its origins in infection makes me think about it.

So what would we do then if and when someone develops mononucleosis at age 19, right? So that's a very common part of a patient's history, not only with MS, but also with ME-CFS. So what do we do then? And I'm not saying I have an answer, I don't. We don't, in general, aggressively treat, and again, define aggressive treatment for a viral infection, you know, I don't.

Linda Bluestein, MD (08:00.457)

Mm-hmm.

Ilene Ruhoy (08:21.282)

know what that would mean either. I think it's defined differently by different doctors and different circles. And I'm not an infectious disease, so I sort of don't want to pretend like I'm an expert in how I would treat it. But I wonder how it would change how we would approach a viral infection of any sort, frankly, if we knew of the risk that is delayed, that is a potential risk for years later after that infection.

Linda Bluestein, MD (08:31.851)

Right.

Linda Bluestein, MD (08:43.107)

Mm-hmm.

Ilene Ruhoy (08:46.678)

I think it would change how we approach it. And maybe even how we approach just overall health in the interim, right? So taking the example of EBV and mononucleosis, it could be 10, 20 years before you develop an illness that might've been related to that infection. So maybe in those intervening years, there's a change of how we treat our health, of what we do, how we minimize exposures, how we treat exposures. There are other exposures that we're concerned about our environment just continues to get.

dirtier and dirtier and it's just, you know, it's terrifying, frankly. So, maybe there are some intervening things that we can do in the meantime, but I think most importantly, we have to understand who really is at risk and why.

Linda Bluestein, MD (09:20.092)

Yeah.

Linda Bluestein, MD (09:28.254)

Mm-hmm. Right, right, exactly. Because there's so many young people that are being robbed of their entire productive adulthood. I mean, you and I both have taken care of so many young people that it's just, it's just tragic. So, yeah, yeah. So, how can patients figure out what might be contributing to their cognitive problems?

Ilene Ruhoy (09:42.187)

It is tragic, yeah.

Ilene Ruhoy (09:51.49)

I think, again, history is sort of an answer, right? So what have you been exposed to? What has your health been like up until that point when you started to experience the brain fog? Usually, there's a whole history behind it. And there are oftentimes points along the way where you recognize that something is happening within the brain.

And then it just progressively gets worse where you can no longer deny it. I mean, I think we all have days where we're like, oh, I'm just, I'm feeling foggy today and I'm not thinking all that well. I'm not thinking all that clearly, but then it seems to clear up the next day. And maybe you had a bad night's sleep or maybe you ate some really inflammatory foods or.

Maybe you had a particularly stressful day. So there are lots of reasons why we can all be feeling like our brain's not working well. I hear people around me say that all the time, right? My brain's not working well today, I need my coffee. But in chronic disease, they have those days and it could clear up, but the bad days, as they call them, get progressively more frequent, and then to a point where now that's sort of their norm.

Linda Bluestein, MD (10:50.335)

Right, right.

Ilene Ruhoy (11:06.146)

and then it just gets progressively worse. So I think that there are ways to identify early on when things were happening. So at some point, though, again, patients, at some point, they get progressively worse, where now brain fog is their norm.

Ilene Ruhoy (12:20.13)

And so in their history, they have to recognize what exposures that they may have had. And that's where patients will go on sort of different paths and they'll test for mold, or they'll have a complete infectious workup for viruses and certain bacterium and tick-borne illnesses. And a lot of doctors will do that complete comprehensive infectious kind of workup. And they'll also get workups for different inflammatory markers. And it might even include imaging,

Linda Bluestein, MD (12:20.514)

Mm-hmm.

Ilene Ruhoy (12:49.402)

For example, a PET scan, which might show an altered metabolism, or volumetric studies, which might show mast cell activation. It could, there could be a workup with regards to immune dysregulation. So you can see how your immune response is working and whether it's been dampened or not, or whether there's been autoimmunity that's starting to develop, which is often a case with progressive and chronic brain fog.

and we find auto-antibodies. So autoimmune encephalopathy is a real entity. We see it in neurology all the time. There are well-described and well-documented auto-antibodies that are associated with sometimes what's called a limbic encephalitis, often called autoimmune encephalitis or autoimmune encephalopathy. And they have classic types of neurologic symptoms. And I think the complex part of this is that these patients with brain fog and fatiguing illnesses don't necessarily present

with the classic neurological symptoms of autoimmune encephalopathies of these well-known and well-described autoantibodies, which are things such as seizures, more classic type seizures, also just altered mental status. And as I said, they generally perform okay on cognitive studies. So it does make matters complicated for when they seek care.

And so the onus really becomes upon the patient of trying to identify, back to your question, trying to identify what has contributed to their brain fog. And it is most often some infectious exposure or some other environmental contaminant or toxicant exposure of which there are many, because as I said, our environment is dirty. And so, but the question is, what do you do about it? So,

Linda Bluestein, MD (14:31.886)

Mm-hmm. Right, right, right.

Ilene Ruhoy (14:35.998)

that's sort of where we always go back to, what do you do about it? So I treat it as an autoimmune encephalopathy is what I do. I mean, so in fact, a lot of the symptoms that patients will describe to me while they're not classic seizure, like not generalized tonic, clonic, not focal seizure per se, you know, there are

Linda Bluestein, MD (14:42.887)

Mm.

Ilene Ruhoy (14:53.43)

sort of more atypical types of seizure disorders that are well known, things like audiogenic seizures, for example. Seizures can actually fool you. Sometimes they're changes of mood. Sometimes they're, and especially in children, you can just have vomiting seizures. So they don't have to look like they look like they do in the movies, right? They're not always this loss of consciousness with rhythmic shaking or, you know, a writhing of the body. They can fool you sometimes. So...

Linda Bluestein, MD (15:10.005)

Right.

Linda Bluestein, MD (15:16.257)

Mm-hmm.

Ilene Ruhoy (15:19.502)

But so I just sort of treat it as an autoimmune encephalopathy basically. And we do get great response. And I think it's because of the immune response to whatever that exposure is, because that's what the immune system does, right? So the innate and the adaptive immune system will work together at some point. First, it starts of course with the innate, which is the first responder, non-selective, fast acting, but eventually the adaptive immune system starts to join in and you have this immune response that if it is a chronic exposure,

there's eventually some form of immune dysregulation. And so I just treat it as, you know, this is an immune response, an immune response that does not yet know that it can just stop and calm down and not create further inflammation. And I work along those lines. And so, there is improvement for sure. There definitely is improvement when we approach it from an immune perspective. And then I do that, you know, I work with, obviously lots of my patients are seeing lots of other doctors as well.

And so usually other doctors are treating the infectious component or the exposure component. And so it's basically hand in hand. I don't do a lot of antimicrobials just because it's not in my scope, but I've certainly learned a lot over the years. And I definitely feel much more well versed in it.

but I still don't do a lot of it. But again, my patients are usually seeing doctors who do. So it's usually a sort of a hand-in-hand kind of treatment plan. And again, there is improvement. Is it a cure? I haven't seen a cure for it. There doesn't seem to be a magic bullet just yet, but.

Linda Bluestein, MD (16:41.208)

Mm-hmm.

Linda Bluestein, MD (16:45.835)

Right.

Ilene Ruhoy (16:56.898)

that is along the lines of autoimmune encephalopathy anyway. So we don't have a cure for it. A lot of these treatments that we do even in classic conventional neurology are long term and usually incomplete or suboptimal. So again, it's not out of the realm of what we know about neurological disorders, especially those of an autoimmune component. I mean, take MS, right? It's an autoimmune. Sorry, I didn't mean to interrupt you.

Linda Bluestein, MD (17:00.546)

Mm-hmm.

Linda Bluestein, MD (17:21.255)

And I'm really... No, no, that's okay.

Ilene Ruhoy (17:25.05)

And we take MS, right? I mean, it's a lifetime. We don't have a cure for that either. We have good drugs that seem to help slow it down, improve symptoms, but we don't have a cure for it either. So again, the idea that we don't yet know a cure is sort of the way, I mean, we always say in neurology, we have a lot of diagnoses, we have very few treatments. So, but I think that we're learning more and more as we go on and hopefully eventually we'll have cures for all of these diseases.

Linda Bluestein, MD (17:51.826)

Oh, definitely. And I think with EDS, for example, the Ehlers-Danlos syndromes, people will say, well, why bother diagnosing them? Because there is no cure. And it's like, well, we don't have a cure for most things. So if we were to use that line, then obviously we would all have a lot less work to do, I think. So I'm curious to go back to what you said about volumetrics and mast cell activation syndrome, if you could elaborate on that.

Ilene Ruhoy (18:03.399)

That's exactly right.

Ilene Ruhoy (18:17.528)

So.

I do a lot of volumetric studies, which are known as NeuroQuant, which is basically an MRI, but with specific software that measures the volume of different regions of the brain and compares it to normative values of regions of that brain based on gender, age, and so on. What I find with a lot of mast cell activation is that, the concern of course always is that there's going to be a lower volume, which can be consistent with atrophy, which always scares patients.

Linda Bluestein, MD (18:28.47)

Mm-hmm.

Ilene Ruhoy (18:48.596)

when there's significant chronic mast cell activation, the volume is larger. And it's presumably, and while obviously I've never ordered a brain biopsy on these patients to sort of confirm this.

I think the presumption is that because there's so much inflammation, which of course brings in inflammatory cells and some fluid, and so it just makes the volume appear larger on the imaging study so that when the measurements are done by the software, the volume is larger than what the normative values would state it should be. So it seems to be a marker of inflammation. And again, I would, you know.

Brain biopsy studies are obviously not viable. And I won't get an IRB to approve it. So, right, exactly. So, but that is what I've seen on patients who have had positive labs that suggests, and as you know, Linda, like there's, you know, it's very hard to get positive labs with mast cell activation. So in the few patients where I've gotten positive labs on, they seem to have this higher than normal.

Linda Bluestein, MD (19:32.756)

No, probably not anytime soon.

Linda Bluestein, MD (19:47.018)

Yes it is. Yes.

Ilene Ruhoy (19:53.806)

volume on a volumetric study.

Linda Bluestein, MD (19:57.162)

Interesting and could you explain the relationship between cognitive dysfunction and mass cell activation syndrome?

Ilene Ruhoy (19:58.383)

Yeah.

Ilene Ruhoy (20:05.626)

There seems to be a definite correlation between mast cell activity, which mast cells are present in the brain as they're present in every part of our body. And interestingly, the brain has unique histamine receptors with H3, as well as H1, H2, but H3 is not found as ubiquitously as H1, H2 are. And of course, all the antihistamines that we generally recommend are H1, H2 blockers. So we don't have a whole lot to counteract H3,

There's one or two medications that are indicated for narcolepsy that are out, but hard to get approved for patients because they're just brand names. They're not generic yet. And then histamine is a neurotransmitter, right? So there are histaminergic kinds of functions of the brain. So histamine, of course, keeps you awake, which is why antihistamines put you to sleep.

chronic mast cell activation. And it's not only the histamine, of course, and there's lots of mediators that come out of the mast cells. And so it's not just about the histamine. In fact, one of things that I regularly preach about, and my patients know this, is that the focus on just histamine about mast cell activation is sort of, in my opinion, a little, you know.

foolish. There are so many different mediators and some of these other mediators can actually do a lot more damage. Speaking of connective tissue and EDS patients, some of those mediators are enzymes that love to break down collagen, right? So I think that there are other mediators that are just as important, if not more important, in some clinical circumstances than histamine. But

Linda Bluestein, MD (21:25.068)

Right.

Ilene Ruhoy (21:44.726)

Regardless, the brain has mast cells and the brain has unique histamine receptors and mast cell activation releases histamine, which is a neurotransmitter and releases other mediators, which are inflammatory. And so we think it contributes to the inability for the brain to basically have these, the transmission that it needs for memories, for words, for...

processing for focus and attention, and it just sort of sends the brain into a state of, like it doesn't really know how to function appropriately as it should. And so patients sort of sense that lack of mental clarity and that feeling like they're thinking through this fog, and which is why they call it a brain fog.

Linda Bluestein, MD (22:25.857)

Mm-hmm.

Linda Bluestein, MD (22:30.234)

And another cause of cognitive dysfunction in our world of the, what do you want to call it, the triad or the septad or the pentad, right? We have these conditions that tend to travel together that we know are causing a lot of suffering and a lot of people. And another component of that is dysautonomia. And in some cases, specifically POTS, right? Postural orthostatic tachycardia syndrome. The cognitive dysfunction with dysautonomia or specifically POTS, how...

What's the mechanism there?

Ilene Ruhoy (23:02.018)

Low blood flow. So what's interesting is that in Mount Sinai, we've been doing transcranial dopplers when we do the invasive cervical traction. And what we're finding is that the majority of patients have low cerebral blood flow, which makes sense with POTS and dysautonomia with the hypovolemic component of it. There just is a lack of blood, or I should say not lack of blood flow, but slow blood flow. And so the blood doesn't get to the parenchyma, the tissue of the brain as

Linda Bluestein, MD (23:10.517)

Mm.

Linda Bluestein, MD (23:25.244)

Mm.

Ilene Ruhoy (23:30.634)

optimally and as efficiently as it should. And when it has low velocity, it doesn't have as much force for perfusion. So the blood might actually deliver the oxygen at some point.

albeit at a lower speed, but then it needs force to actually perfuse into the brain tissue. And so it doesn't do that as efficiently. It does it, obviously, but this is sort of a subclinical global hypoxic kind of effect. And that really causes a lot of difficulty in thinking processes, especially when you think about how important oxygen will, I mean, that's...

Linda Bluestein, MD (23:44.425)

Mm-hmm.

Ilene Ruhoy (24:06.894)

goes without saying, everyone knows how important oxygen is, we all need oxygen, but the mitochondria need oxygen, right, oxidative phosphorylation, as the name implies, needs oxygen. So just the low flow and the low perfusion rate seems to impair the ability of the neuronal cells to really efficiently and effectively and optimally do their function, perform their function. So that definitely contributes to the brain fog kind of experience.

Linda Bluestein, MD (24:36.286)

And it seems like that could be related to the high extraction ratio of the brain, right? So with every pass of oxygen, the brain is going to extract much more oxygen than muscle or fat or, you know, the kidneys are up there, right? The kidneys and the heart are also up there, but the brain is number one. At least that's what I remember from my anesthesia training.

Ilene Ruhoy (24:41.647)

Mm-hmm.

Ilene Ruhoy (24:48.326)

That's right.

Ilene Ruhoy (24:53.942)

Absolutely. Right, I mean, the brain is the most metabolic active organ, right? So, the brain, the brain is everything.

Linda Bluestein, MD (25:00.926)

Right, right, okay. It is, it is, absolutely. And you mentioned a little bit about cranios cervical instability, but I definitely wanna talk about, you know, upper cervical instability and some of the other things that I'm sure you see at the EDS Chiari Center in New York. Can you explain to us, you know, what that is and how that relates to cognitive problems?

Ilene Ruhoy (25:19.046)

Mm-hmm.

Ilene Ruhoy (25:25.786)

Craniocervical instability is when there's an unstable C0, C1, C2 complex, the C0 being the skull and then C1, C2 being, of course, the first two cervical vertebrae of the cervical spine. And so, and it's held together by several different ligaments. And when there is a connective tissue compromise as there is with EDS patients, that complex becomes very unstable. And there's a couple of consequences of that.

One is what we refer to as cervical medullary syndrome, which is compression of the lower end of the brainstem. And, you know,

Cervical medullary syndrome is not unique to CCI. If you had a big tumor sitting there, you would still have compression of the brainstem. So you would still technically have cervical medullary syndrome. But it is a very common consequence of CCI. And so when you have compression of the lower end of the brainstem, you can also potentially have compression of the vessels that feed the brain blood and drain the brain of blood, as well as CSF compartments, so where CSF flows. So when you compress all of that, then you alter the dynamics.

And then the compression of the lower end of the brainstem can cause some significant symptoms in the sense of the lower end of the brainstem has not only the...

the lower cranial nerves, you know, like nine, 10, 11, and 12, but also nuclei that are part of the autonomic nervous system, nuclei that are part of the neuroendocrine axis, you know, because they speak to the hypothalamus, so the hypothalamus pituitary thyroid adrenal gland, so you can find abnormalities along those lines. And then with compression flow, you can have all, you can not only have brain fog, but you can also have elevated intracranial pressure.

Ilene Ruhoy (27:09.33)

is, you know, so when you have an unstable C0, C1, C2 complex, that C1 can move around a bit, and the C1 has a bony protrusion called a tubercle. And so sometimes that, because it moves, that tubercle can sit on the internal jugular vein, which sits, which basically abuts this complex. And when you compress that jugular vein, you are

basically causing compression of outflow. And so there's congestion. And I always liken it to a highway. So if the exit is closed off, like everything backs up, right? Out here in Seattle, it happens all the time. Takes forever to get anywhere. So you have congestion, and everything just sort of backs up. And that can cause elevated cranial pressure. And it's because, you know, a lot of people

Linda Bluestein, MD (27:41.198)

Mm-hmm. Yeah.

Ilene Ruhoy (27:55.854)

there is an exchange between the fluid compartments of the brain, so the arterial system, the venous system, the CSF compartments, there's exchange of these fluid compartments, and actually, that's how the glymphatic system works. So when you have congestion of one, it can affect the others, and so you have elevated intracranial pressure, and it's not the classic, what's always been called, of course, IIH, idiopathic intracranial hypertension, but I don't like that name because I don't think it's idiopathic any longer.

The classic IH and the classic teaching of it, of course, was the fear of optic nerve swelling and loss of vision. And that was always the dreaded fear because if you were to lose your vision from IH, it was lost forever. And so it was always like, well, is there papilledema? And if so, we have to intervene basically urgently. But this is the kind of elevated intracranial pressure, at least certainly early on and for a...

Linda Bluestein, MD (28:31.033)

Right.

Linda Bluestein, MD (28:39.778)

Right.

Ilene Ruhoy (28:50.306)

a long period of time that doesn't have great vision involvement, but it does have the other classic symptoms of IH, which are debilitating for patients. Things like severe headaches or pulsatile tinnitus, feeling dizzy and lightheaded, even syncope. And because it's related to CCI, there's an overlap of symptoms that are...

are because of the CCI. So even things like difficulty swallowing or facial pain, atypical facial pain, intraoral pain, certainly neck pain, and then there's change of position can sometimes flare symptoms or not. Sometimes the change of position can take the, or lighten the compression on the jugular vein or improve the craniocervical instability because in a certain position it's in better alignment. So it becomes very complex for patients to try to manage.

And the more definitive treatment, of course, is surgical intervention, which lots of people are rightfully so afraid of. So it's something that we work very closely with patients to try to do a comprehensive evaluation to understand what their symptoms are about, and perhaps there's other potential causes. We try a lot of medical management first, for sure, before we sort of decide that maybe surgery really is the best option for you.

Linda Bluestein, MD (30:12.638)

Yeah, that's so important because there's obviously complications that can happen or suboptimal outcomes. But sometimes people need to go that route. But it's good to try the lower hanging fruit first. So what about the opposite? If someone has a CSF leak, for example, could that also impair their cognitive function?

Ilene Ruhoy (30:18.131)

Okay.

Ilene Ruhoy (30:22.306)

Yeah, absolutely.

Ilene Ruhoy (30:31.654)

Mm-hmm.

definitely can. So it lowers, obviously you have intracranial hypotension now. And, you know, so it can come from two separate reasons. In my experience with my patients, at least with the EDS population. So the dura is very dense connective tissue. And sometimes with EDS patients, that connective tissue, of course, is vulnerable and at risk. And you can have a spontaneous tear. Sometimes it's after a lumbar puncture or some other intrathecal intervention.

But also if you have chronic, long-standing, elevated intracranial pressure, you could easily spring a leak. And again, secondarily, it's from just sort of the vulnerability of that dura. And so, and that's how a dura leak, a CSF leak can happen as well. So you can first have high pressure and then spring a leak and then have low pressure. And so yes, so low pressure, of course, brings the pressure down. And then you can get, again, if it's somewhat chronic.

And you know that and when I say chronic that duration of time is different from patient to patient You know people always like to ask me like well, how long? And it really is different patient to patient to be honest But you know in a long enough period of time of being at low intracranial pressure you can develop what we refer to as brain sagging or

Linda Bluestein, MD (31:41.331)

Right, right.

Ilene Ruhoy (31:52.806)

cranial settling where things just sort of sag down. And that definitely contributes to brain fog and cognitive dysfunction. It also puts you at more of a risk of low-lying cerebellar tonsils, which EDS patients are already at risk of, as well as just a true Chiari. And then again, the brain sags, which can compress.

flow again of CSF, of compressed flow of the vessels. So there, you know, obviously there are large vessels, but then there are moderate sized vessels, medium sized vessels, small vessels, tiny vessels, you know, that feed the crevices of the brain. So although the smaller vessels are very vulnerable and so they can basically collapse under the weight of just even brain sagging, but also under the weight of inflammation, frankly. And I think that, and that contributes to, back to the global.

subclinical hypoxic state, it definitely contributes to just, you know, inefficient oxygen delivery and perfusion. And that alone can contribute to brain fog. You know, it's interesting because there is something called vascular dementia. And while I've already stated that, I don't think, at least at this moment in time, that brain fog could, because cognitively they seem to be...

you know, decently intact. And I don't think that this is a dementia syndrome in the making, but there is something called vascular dementia. And on imaging, we see evidence of just widespread, what we refer to as small vessel disease, you know, where these small vessels just basically have collapsed and are no longer delivering the blood to these, you know, to small pieces of the brain parenchyma. And, you know, that happens in older people over a lifetime of basically inflammation, which sort of goes to what we're saying, right? We're just all exposed to, I was about to say a bad word.

I'm a New Yorker, I can't help myself. We're exposed to stuff every day. So we're, I mean, our, you know, our brains are inflamed, our bodies are inflamed. And so these small vessels really bear the, bear the burden and, and collapse under the weight of that. And then they don't do their job, which is, like I said, you know, they're supposed to be feeding the tiny pieces of our tissues. So, so they don't do that. And so, you know,

Linda Bluestein, MD (33:34.565)

Ha ha

Linda Bluestein, MD (33:39.47)

totally with you. Yeah.

Linda Bluestein, MD (33:46.603)

Mm-hmm.

Ilene Ruhoy (34:01.754)

I think, so what I say, and while I say that, you know, these patients at least are performing okay on cognitive tests, you know, it's not that there isn't a big worry in the back of my head or a big fear that if we don't somehow correct this, that, you know, we're up for something down the line that's going to be a lot harder to treat and a lot more, a lot more debilitating, though that's, you know, hard to say because these patients obviously are quite debilitated and their quality of life has really been upended, so.

Linda Bluestein, MD (34:30.71)

And as you were talking about the low intracranial pressure, I was thinking about people with Tarlov cysts. I had this one patient whose entire spine was full of Tarlov cysts, like it was unbelievable. And that would cause, or that could cause basically a shunting or wouldn't that also potentially cause low intracranial pressure?

Ilene Ruhoy (34:38.477)

Mm-hmm.

Ilene Ruhoy (34:49.861)

Mm-hmm. Yeah. It absolutely does, yeah, for sure. I mean, they are filled with CSF fluid. And the bigger that they get, the more fluid they're removing out of the spinal canal. I mean, your system does make more fluid, but again, and then the bigger the trial of cysts get, of course, that they can cause nerve compression, because they're perineural sheaths. So. Um.

Linda Bluestein, MD (34:57.538)

Mm-hmm.

Ilene Ruhoy (35:14.342)

So it becomes problematic and Tarlifes cysts are definitely a source of lowering intracranial pressure. And you know, it's interesting, because, as you know, like, you know, we learned that Tarlifes cysts were just like incidental findings. And so

You get to a point in medicine where you just start to second guess everything you thought you knew. To be honest, and it's always nice to talk to other doctors, it's an uncomfortable place to be in sometimes because you feel like, did I know anything at some point? Yeah, it's not a comfortable place to be.

Linda Bluestein, MD (35:35.043)

Right, right, right.

Linda Bluestein, MD (35:41.186)

Hahaha

Linda Bluestein, MD (35:44.808)

Oh yeah, yes.

Linda Bluestein, MD (35:49.023)

Right, right.

Ilene Ruhoy (35:55.318)

In some respects, it's almost like it's liberating because now you're sort of free to think about it in a different, from a different perspective and see it differently. And you're, and you, you know, you're, when you see as enough patients and you sort of see clinically the effect of it, like it's almost like you get these epiphanies every day. And I, and people have heard me say this, and you know, I say this on my own podcast all the time. I learn from patients every single day. I really do. I learn from them every day. And I love to apply.

Linda Bluestein, MD (35:58.686)

Mm-hmm.

Ilene Ruhoy (36:22.81)

like the knowledge that I have as a neurologist to what they're experiencing. And you do that enough, you start to actually put the puzzle pieces together, right? And you start to see it for what it is. And that is a rewarding feeling. So, but it's true that at some point you just start to think like, did I know anything at some point? Like, what was I taught? Like I have to second guess everything.

Linda Bluestein, MD (36:33.023)

Right.

Linda Bluestein, MD (36:48.246)

Right, right. I sometimes think that I started out, I went through very traditional medical training and I thought I knew certain things and I wouldn't say that my mind was closed, but you think that it's more encapsulated and then sometimes I feel like my mind has become so open that everything's falling out. Yeah. Right, right.

Ilene Ruhoy (37:01.718)

Yeah, 

Ilene Ruhoy (37:07.21)

Oh my God, that's actually a perfect way of putting it. It's so true though, right? Like at some point I think like, okay, I gotta step back because now I'm just feeling crazy. I don't know.

Linda Bluestein, MD (37:14.89)

Right. Well, because you start reading, I mean, you know, you could, and you have a PhD, which I'm like, Oh, my God, I wish I'd gotten a PhD, you're so brilliant. And you have such a great combination of, you know, you're, you're getting your PhD and toxicology and working with the EPA. And I mean, that's who knew that was going to be so incredibly relevant? Well, I guess you probably did. But I think it's Yeah, yeah, I think that's just amazing. Because you're right. So I had a Tarlov cyst.

Ilene Ruhoy (37:35.374)

The universe had a plan, I always say.

Linda Bluestein, MD (37:42.318)

And back in 2009 when they first discovered it, that's exactly what I was told. Oh, it's an incidental finding. And I kept looking at my films and seeing like this big marble and thinking, is it really? Because it seems like maybe it's not, and eventually had surgery and did much better. So, yeah, it is, I think it is challenging sometimes, kind of walking that line between, you could fall into all these rabbit holes, right? And like,

Ilene Ruhoy (37:53.922)

Yeah, exactly.

Ilene Ruhoy (37:57.861)

Mm-hmm.

Linda Bluestein, MD (38:11.914)

end up spending so much time. And I learn from my patients every day too. And they're amazing and fortunately, usually pretty patient with that understanding that I'm happy to research things and learn along with them and help them in any way that I can. So that's what I love about the podcast is I learn from brilliant people like you and then I can apply that in my own clinical practice. So it's very helpful.

Ilene Ruhoy (38:11.93)

Definitely.

Ilene Ruhoy (38:35.938)

Oh, well, that's, yeah. I agree with you. I mean, I love working with colleagues like yourself. I mean, you know, we've known each other for a long time now. And, um, I've always learned a lot from you and, and I, I really appreciate you. And I appreciate your work. I've said this to you so many times, but I want your listeners to know how much I appreciate you because you really do some really tremendous work for, especially for the EDS population, like it's incredible and they're thankful for you for sure.

Linda Bluestein, MD (38:45.93)

Yes.

Linda Bluestein, MD (38:54.748)

Yeah.

Linda Bluestein, MD (39:01.438)

Like, like...

Well, I appreciate that. It's as you know, because you have your own podcast and doing all of these other things that we do, it takes up a lot of time. But it's when you get that appreciation, it makes it all worth it, right? When you feel like you're making a meaningful difference, that's when you go, yeah, yeah.

Ilene Ruhoy (39:13.316)

Yeah.

Ilene Ruhoy (39:17.958)

for sure.

I agree. I love what I do. I really do. I love what I do. I wish I knew more every single day so that I can help more. But I feel like as each week goes by, I've learned even if it's just one new thing, then I know that I'm going to keep going.

Linda Bluestein, MD (39:27.662)

Mm-hmm. Right.

Linda Bluestein, MD (39:35.532)

Right.

Yeah, that's amazing. And I'm thinking as we're talking, I think we need to break this up into two conversations because we're really diving more deeply into the causes of cognitive dysfunction. And you think of cognitive problems, I guess I should say, so people don't think that does mean impairment by definition, but maybe we should have the conversation about treatment as a separate conversation because I feel like, yeah, I feel like that might be.

Ilene Ruhoy (39:49.519)

Mm-hmm.

Ilene Ruhoy (40:03.018)

I would love to do that, yeah. Absolutely, because they're, yeah. And I didn't go deep enough into the immune component to it. Maybe I did, but the glial cells and their role, which sort of leads me into the treatment plans that I come up with for patients, which is really about the immune response. And so we should definitely have a second conversation about that, because there are things that can be done. And it's not all about medication sometimes, and sometimes it is about, you know,

Linda Bluestein, MD (40:20.787)

Mm-hmm.

Linda Bluestein, MD (40:25.782)

Yeah.

Ilene Ruhoy (40:31.246)

There are some supplements that I have found to be helpful, but there's also some other nonpharmacologic modalities that I think are helpful. So there are, you know, there are lots of things that can be done. So I would love to have that conversation.

Linda Bluestein, MD (40:37.652)

Mm-hmm.

Ilene Ruhoy (40:50.275)

I know. Oh gosh, yeah.

Linda Bluestein, MD (40:53.438)

For sure.

Ilene Ruhoy (40:56.678)

Mm-hmm.

Linda Bluestein, MD (41:11.026)

aspects because I feel like that's something that very few people really appreciate and you're such a perfect person to talk to about that. So what should we know about nutrients and cognitive function? That's a small question, right?

Ilene Ruhoy (42:38.478)

Nutrition is super critical for cognition. Food is medicine is like a passion of mine and I'm constantly preaching it, especially to my daughter, if you ask her.

Linda Bluestein, MD (42:51.563)

Yep.

Ilene Ruhoy (42:52.402)

I always, and I explain to patients that the foods you choose can either be anti-inflammatory or pro-inflammatory, right? It's really that simple. It's that black and white. And I don't preach what kind of foods people should eat because I know that there's a lot of dialogue out there, especially on the internet, about what the appropriate diet is. I'm vegan.

Linda Bluestein, MD (42:57.98)

Mm-hmm.

Ilene Ruhoy (43:14.498)

full transparency. I don't insist my patients become vegan. Many of my patients will say they just feel better when they eat animal meat. And I don't argue with them because they know their bodies better than I do. And if that's what they believe and feel, then that's what I believe and feel for them. But regardless, I think everybody's body responds either in an inflammatory manner or in an anti-inflammatory manner based on what you consume. And so whatever feels good to that body, people should eat.

Linda Bluestein, MD (43:18.25)

Mm. Yeah.

Linda Bluestein, MD (43:31.607)

Mm-hmm.

Ilene Ruhoy (43:44.186)

But having said that, I think there are a few rules that apply to everyone, which is that we should be avoiding processed foods. And by the way, none of this is rocket science. Like everyone knows this. But avoiding processed foods, avoiding sugar, and that means like processed sugar and simple sugars. In fact, the brain prefers the glucose molecule, but not in the form of donuts and cookies, more in the form of from complex carbohydrates, because our body really does have very intricate

Linda Bluestein, MD (43:54.37)

Mm-hmm.

Ilene Ruhoy (44:12.462)

biochemical mechanisms to break down complex carbohydrates to basically deliver the glucose molecule to the brain and other organ systems as it wants to see it. So complex carbohydrates are actually super important. And in fact, I think grains have gotten a really bad rap in some circles and I never really understood why. The body really does appreciate it. It needs it frankly. And also dairy, you know, so.

Linda Bluestein, MD (44:30.158)

Mm-hmm.

Ilene Ruhoy (44:38.59)

Dairy is very inflammatory, and I have a lot of patients who tell me they can't live without cheese. So I don't have a great response to that. I think that dairy is very inflammatory. There is a ton of research to support that. And so it's those simple rules that I just ask my patients to follow, at least for a period of time, and just sort of see how their bodies feel after that. And many of them will.

Linda Bluestein, MD (44:44.942)

Ha ha ha!

Linda Bluestein, MD (45:02.26)

Mm-hmm.

Ilene Ruhoy (45:04.29)

1. And it's baby steps. And so then I just say, increase your consumption of vegetables. We do know that the wide variety of vegetables and fruits have all the phytonutrients that the body needs, the body and the brain, frankly, it needs. You can find them in the plant world. And so then it's baby steps. So increase the number of dark leafy greens that you're eating. So it's...

Linda Bluestein, MD (45:07.473)

Mm-hmm.

Linda Bluestein, MD (45:17.099)

Mm-hmm.

Ilene Ruhoy (45:28.13)

I just work with patients and it's like a journey. And so it's not only that I treat them medically as a neurologist, but I'm also trying to sort of improve the things that they do on a daily basis in their lives that can only help them, not hurt them. And that's how I explain it. So by increasing how much Cal you consume won't hurt you. It might help you. And I actually, I've been known to give a recipe or two because I've come up with very

Linda Bluestein, MD (45:50.974)

Right.

Ilene Ruhoy (45:57.018)

consuming these kinds of foods that some people are not used to eating. So I work with them, and it's really a part of what it's a labor of love. It's part of what I like to do. But also to be fair, I don't necessarily do it at the first appointment because a lot of my patients have just been, are really sick and have been suffering for a really long time. And the last thing they want to hear me say is like eat more salad. But there does come a point along the way of my journey with a patient.

where I say, okay, we need to start really like improving your nutrition, improving your sleep, improving how you move, improving your stress. So I start working with them on more lifestyle factors somewhere along that path. But yes, nutrition is just like I said, it's just, it's a hobby of mine. I love it.

Linda Bluestein, MD (46:44.082)

And I know we talked about that also in episode 13, so people can definitely go listen to that one as well. So we're definitely gonna have a follow-up conversation. I'm so excited about that. And so we're gonna defer a lot of the questions that people submitted online for the treatment, because I think that's where a lot of those questions will fall in. 

Linda Bluestein, MD (47:29.278)

Yeah, okay, so before we wrap up, I would love for you to tell people where they can find you online, and I want people who are watching this on YouTube to be sure to hit the thumbs up if you're finding this video helpful, so other people can find it, because this is such important information from Dr. Ruhoy, and I want everyone to know what she's sharing today. It's so, so important. So can you let us know where people can find you online, and I want people to look forward to the next part of this conversation.

Ilene Ruhoy (47:58.754)

So I'm not great at social media, but I do have some social media accounts. I have an Instagram account, IleneRuhoyMDPhD I have a Twitter account, at Ruhoy MD. And then I have a TikTok account, believe it or not, thanks to my daughter. And it's IleneRuhoyMDPhD yeah. So it's the name I use for, and that's all I have really online. I don't have any fancy websites or anything like that.

Linda Bluestein, MD (48:27.682)

Well, that's okay because we will have links to all of that in the show notes. So people will be able to find that. So you've been listening to the Bendy Bodies with the Hypermobility MD podcast and your guest today was the amazing Dr. Ilene Ruhoy and we will be having her back to talk about treatment of cognitive problems. And Dr. Ruhoy, thank you so much for coming on the Bendy Bodies podcast today. Your knowledge is just vast and I am so grateful to you for your incredible generosity.

Ilene Ruhoy (48:29.314)

Okay, great.

Ilene Ruhoy (48:56.666)

Thank you, Linda. It was really, really nice to be here. I appreciate it. And I look forward to the next conversation because treatment is super important. So, and a fun conversation.

Linda Bluestein, MD (49:05.63)

Yes, that will be a super fun one.

Linda Bluestein, MD (49:10.837)

Okay.